Hi,
I'm back from getting the Prialt med injected into my spine. I was pain-free
an hour after the procedure for the first time since May.
I'm had these side effects after the Prialt and the procedure:
Had spinal cord headache 1 hour post procedure took Fiorocet, headache did not
return. Dr. Kaufman attributed this to the amount of scar tissue present and
the needle size he used to deliver the Prialt. It may have caused a leakage.
At home (7:30) upon waking in the chair after a 30 minute nap and for the next
hour experienced uncontrolable chills, and halucinations. The halucinations
lasted 15 minutes. Administered Clonazepam (0.5), no effect.
Went down to bed and each time (2) that I awoke from sleep some symptoms would
return. The first awakening I began to talk incoherently. After about an hour
I was fine (still pain free). The second awakening was triggered by my PTSD,
the episode was short, and I laid awake until 11:30 PM when the pain began
returning and I took a Percoset. The rest of the evening was uneventful.
Conjecture - could above be withdrawal effects from opiates? No Percoset for 26
hours?
So, Prialt effectiveness:
Wearing Fentenol patch (75)
Last oral pain med 9:00 pm prior evening, nothing after (in order to check the
effectiveness of Prialt).
Prialt Administered 8:00 AM . Pain free.
11:30 PM pain returned to the point were Percocet was administered. (total 15
hours 30 minutes).
Dr. Kaufman has suggested a second trial at a lower dose may yield more
positive results, given the positive effects of the Prialt. He suggested we
wait a few weeks for the results of our Lyrica application to the pain med mix.
(as suggested by Dr. Lam and Dr. Kirshblum). He also stated that the only
goal in this excercise is to return my quality of life, which was appreciated.
I'm of a mind that a second trial is absolutely worth the effort. Given my
aversion to opiates and the fact that I have never taken them for any prolonged
period, I believe the withdrawal had to have some mitigating effect.
Additionally, chills and other ancillary negative (PTSD) results might be
attributable to the trauma of the procedure. I've experienced the before during
UTIs and bowel problems.
So, assuming the Prialt delivers dosages with the Medtronic pump enough to
cover a 24 hour period, I won't need anything else. If I do, Lyrica seems like
the best non opiate candidate as an add-on for controlling the rest of the
pain.
I've put off ordering the S. American poison frog (Phyllobates terribilis) for
now. Let's get the snails to work. Thanks everyone for your efforts on my
behalf.
Thanks Corie,
Don't let what you cannot do interfere with what you can do!
Billy
Don't let what you cannot do interfere with what you can do!
Billy
www.langfoundation.org
----- Original Message -----
From: Corie Jones
To: quad-list
Sent: Saturday, October 03, 2009 12:43 AM
Subject: Re: [QUAD-L] Prialt
Hi Billy,
I just wanted to briefly give you my experience with trying Prialt in my
baclofen pump. I actually had the baclofen pump surgery done to try
intrathecal medication because I have tried practically everything
medication-wise out there for the severe, nerve pain I have been living with
for 16 years. I got very tired of trying medication after medication and
dealing with all of the side effects. So my pain management doctor recommended
trying the baclofen pump and having anesthesia type medication with the
baclofen in the pump to see if it would decrease my nerve pain. I cannot
remember the name of the first medication I tried, but it did not help. So
after a couple of years thinking about the prialt and desperate to get pain
relief, decided to try it in my pump. Through the pump, they start with a very
very low dosage to try and bypass any side effects, which sounded kind of scary
(vision problems, memory problems), so anyway I was never able to get up to the
full therapeutic dosage my doctor thought would work for me because I had a
different side effect of severe constipation when using the prialt. My doctor
tried to tell me it wasn't from the prialt but that's the only thing it could
have been because that was the only thing I was doing different. So knowing
that I was going to have to continue to go up on the dosage, I opted to
discontinue it. I never got any relief from it on the low dosages I was on. I
was very disappointed. I had such high hopes that this medication would be the
answer to my prayers to give me pain relief. It may have if I could have stuck
it out, but I just could not do it. So I didn't get the typical side effects,
but still a side effect I could not tolerate unfortunately.
I wanted to share my story, not to discourage you from trying the medication,
but to give you my experience just in case you have similar problems with the
prialt. And I really hope it works for you. It's so difficult living with
this chronic nerve pain. It just drains your quality of life. So good luck
and definitely keep us posted.
Take care, Corie
----- Original Message -----
From: Billy Lang
To: quad-list
Sent: Wednesday, September 30, 2009 11:35 AM
Subject: [QUAD-L] Prialt
Tomorrow, I am going to a test to see if Prialt delivered through a pump
directly to my spine will alleviate my pain.
http://www.prialt.com/
After 20 years in the chair I am suffering from herniated discs in my
lumbar and arachnoidtis. I have yet to find a combination of opiates
(oxycodone, OxyContin, patches, Lyrica, etc.).
The drug has had some positive effects on MS patients. I am told that I
will be the first quadriplegic to test the drug's effectiveness.
I'll let you know how it turns out.
Don't let what you cannot do interfere with what you can do!
Billy
www.langfoundation.org
